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Had adverse reaction to Neurontin given for nerve pain. Any specific reason?

Feb 2013
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Practicing since : 2002
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My name is XXXXXXX . I'm 64 yrs old. On March 27, 2008, I had an adverse reaction to Neurontin 300mg capsule given for nerve pain. The reaction was on the 2nd day, flailing limbs, emotional lability, ( laughing and crying ) My eyes saw a bright light for several minutes like TV snow.. Every nerve in my body was affected, uncontrollable movements in every part. It is what it is, it can't be fixed. Diagnosis ~ Myoclonus, ballism, and dystonia of right hand, Tics and Tremors. My nerves feel like they are vibrating rapidly through me.
The MRI showed my hypothalmus gland has a 5mm lesion or hermatoma "immediately inferior to the optic chism and right optic tract XXXXXXX
The pharmacist said it was my doctor's fault for not giving me the lowest dose of 100mg. I thought she was lying. The problem is, I do not think my Dr. was wrong, the Physician's Desk Reference doesn't even mention the 100mg pill, but I did find it on line.
I suspect that my doctor was not even informed that he could have started me on a lower dose that was available, I feel like other people could have the same reaction, especially the elderly who might receive it for Shingles.
I did report it to MedWatch in 2012, before that I was so depressed I was hiding from the world.
Only one good thing happened to me. I developed the ability to write poetry. I often think of one, and write it down, I think my hypothalmus gland is pouring something into my system.
My OHSU Motion Disorder Specialist, Dr. XXXXXXX XXXXXXX took a 5 min. video and sent it to other doctors.
I also have bad anxiety. I take calming drops for it, the natural kind that doesn't cause sleepiness. provided by my ND, Juniper XXXXXXX I know this anxiety is getting worse because I worry about people who do not get proper warning about what drugs can do. I'm writing a book.
Dr. XXXXXXX Sethi wrote "Drug-Induced Movement Disorders" I bought his book, it's more for college medical students. He definitely sees that GABA causes movement disorders on page 337. He's is a Professor in Atlanta XXXXXXX My older Dr. said Neurontin did not cause this problem, but he listed many drugs and asked if I took any of them? I thought he was worried about liability. Do you think my hypothalmus gland is making me more emotional?
Why are the people who should be believing these movement disorders are drug related, trying to say they are "psychogenic?" The National Institute of Neurological Disorders and Stroke are reporting that people on YouTube -66% have a psychological condition or mental state rather than a disease with a physical cause. They could not touch their muscles, or take case histories, they looked at their faces !
I looked up -"PHYSIOGNOMY" " an assessment of a person's character or personality from his outer appearance especially the face."
What would they say about my character if they looked at my tics and tremors, the loss of a smile, causing me such turmoil, "I could die from embarrassment"
There were also obsessions that began a year after the reaction: I drove to town for my obsession, taking pictures of fascinating cars. I almost made my husband buy me an old Chrysler Imperial, because the guy took my picture while I sat in it. Thank goodness I came to my senses. Thank goodness, I stopped and I can recognize it if I start another. That little hypothalmus gland isn't normal.
Posted Wed, 20 Mar 2013 in Medicines and Side Effects
Answered by Dr. E Venkata Ramana 5 hours later

Thank you for your query,

I can understand your concerns and worries about the medication and neurological, emotional, and mood related symptoms.

As you have developed reactions on the second day of starting neurontin like emotional lability, flailing limbs, and abnormal movements, it could be related to drug induced adverse reactions-one possibility.

But at the same time, you were diagnosed to have a hypothalamic hammartoma, which may cause emotional lability like uncontrolled and unintentional laughing and crying (called gelastic seizures) and abnormal movements. Another reason for supporting this is dystonia of only right hand.

Structural lesions of the brain will present with one sided symptoms. So hammartoma of hypothalamus may be considered for your symptoms-another possibility.

Drug induced adverse events usually will subside once that drug has been stopped, whereas the symptoms related to hammaroma will persist.

So I advise you to consult your Neurophysician to look for the scope to stop or taper neurontin for some time to observe for any improvement in the symptoms.

The minimum dose of neurontin is 300mg. And even lower dose like 100mg is indicated in patients with kidney function impairment with low creatinine clearance.

And I congratulate your creative work of writing poetry.

Hope I have answered your query, if you have any clarification please let me know.

Above answer was peer-reviewed by
Follow-up: Had adverse reaction to Neurontin given for nerve pain. Any specific reason? 8 hours later
Thank you for your explanation, and I've never heard of "gelastic seizures." I guess I didn't clarify that after the 2nd Neurontin pill, I did not take any more, I call it "Rotten Neurontin." One thing that happened during the initial reaction was my left hand developed a very hot feeling as though the nerves were burning inside. I could feel my hand rapidly shaking, this was during the few minutes my eyes saw the bright snowy light,
Doctors have had a lot of doubt about that part so I left it out. After all, doctors are only supposed to believe what thet can see. Do you think they are trained to disbelieve anything that doesn't sound like it is in the realm of reality? Who could ever believe what happened to someone 2000 years ago?
A good example, is the blinding light that XXXXXXX the persecutor of early Christians, saw and temporarily blinded him for 3 days, yet no one else could see his blinding light. ~ Read Acts 9: 1-9. Consider it the onset of his eye problems.
He was also difficult to look upon. He also had to have a secretary write his letters. Since his embarrassment was obvious he thanked his friends. ~ "But you know that it was through a sickness of my flesh, I declared the good news to you the 1st time. And what was a trial to you in my flesh, you did not treat with contempt or spit at in disgust....if it had been possible, you would have gouged out your eyes and given them to me. Galatians 4:13 - 15. He left behind a thorough case history.
Maybe you would see the harmtoma as a gradual build up with a sudden onset of all the other symptoms that occurred 45 minutes after the ingestion of Neurontin. I screamed as these symptoms rushed through me, leaving me looking like a freak, and soon thereafter, I thought about swollowing a bottle of Benicar pills.
But I knew I would hurt my family and the friend that came rushing to my side, she grabbed the bottle and started making phone calls. ~
When they did try to commit me, in July, I was taken to the ER, the doctor ignored the jerking, never ending movements.~ (Not In My Records.) At least I had a reason for not staying. ~"I will go to Dr. Garner, I haven't been to him since last year," (beginning of nerve pain in lumbar region). He is such a careful psychatrist. He said he could help my suicidal thoughts. He started me out on the lowest "Lamotrigene pill" (25mg) but i had to cut it into crumbs. He hoped it would slow down my runaway seizures. But there was also something else he was looking for. It also elevates the mood. After taking little crumbs, he built me up to 1/4th of the pill, because things were funny. ~ He did say that most people needed a bigger dose. I started treatment in July 2008.
In 2011, he told his patients he was going to retire in 5 months, his lease would expire. I told him I wanted to try to wean off the Lamotrigene. To my surprise my mood was still funny and the poetry was still there. He would save my records, if I had trouble just let him know, he would transfer me. ~ When I saw the motion disorder specialist I had another MRI on my brain, this time with a contrast. I asked for a report, but they sent me the CD instead. I don't know how to open it. I will return to her in April and find out if its still growing. My increasing crying spells, tell me it might be bigger. I don't really know, I'm waitig for the Dr. to give me the results, and my regular Dr. also wants to see the CD.
I had never heard of on-line doctors. Don't you have a regular office? I also am "Boshie" on Experience Project, a good place to go to look for my invisible friends and write stories and poetry. My best friend left after her Tardive Dyskinesia made her eyes stay closed, and light was also a trigger. Her drug was Geodon. Several others got it from that drug. It's a very good site for a support group.

Answered by Dr. E Venkata Ramana 8 hours later

Thank you for explanation,

I agree with you that doctor should listen to the patients complete history of their complaints and concerns and he should analyze them in all aspects in addition to their examination and evaluation findings.

Doctor has to look into all aspects of a problem or a disease like emotional, psychological, social, and physiological aspects before coming to a conclusion and has to manage them accordingly.

I have a regular office in India.

Hope I have answered your query, if you have any clarification please let me know.

Above answer was peer-reviewed by
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